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Author Topic: How do you get comfortable?  (Read 18737 times)
casper2636
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« Reply #50 on: November 26, 2010, 11:36:10 AM »

When I was younger (not too long ago), I used to give my brother wedgies where I was just left just holding the waist band of his underwear, and the left over was lodged in his crack...what's that called?
By the way, the information on wedgies was invaluable!
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Riki
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« Reply #51 on: November 27, 2010, 07:14:59 PM »

yeah... I giggled at the flying dutchman....

Oh.. I just remembered something... Murf, I was going to get a snuggie, and ask the nurses if I could leave it in the blanket warmer... *L*  I never actually did it, though.
« Last Edit: November 27, 2010, 07:46:36 PM by Riki » Logged

Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
lunadatura
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Fate happens, Destiny is what you do with it.

« Reply #52 on: November 27, 2010, 10:42:03 PM »

Ah so nice to know that in additon to the usual symptoms and challenges of ESRD and D we also have mutual company in the NUMB ASS department. NA was particuarly challenging when ( after smashing my knee to bits carrying my PD machine and it causing me to take a tumble down 15 cement steps) I had to be on bed rest and no weight on my bad knee for 3 months - my ass hurt more often than not. Now that I am more mobile and able to be more active in my life in general its less of a problem. Recently thought I had another 4 week stint of hospitalizations (septic schock from IJ catheter) so the NA reoccurred. Stealing the gel cushion of a wheel charir and inserting in under my hind end on top of the D chari idid help.

happy sitting
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Diagnosised FSGS via biopsy 11/2006
Started Dialysis 5/2009
hemo-dialysis except 9.09-6.10 = peritoneal then back to hemo
currently in center hemo 3x per week
Evaluation for transplant July 2010
Almost received transplant 8.13
repeated calls and admissions for transplant since then but no kidney yet
3.1.14 got ideal kidney and having exceptional recovery - creatine went from 8.5 to 1.1 in less than 2 weeks.
tyefly
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« Reply #53 on: November 27, 2010, 10:55:06 PM »

 I will admitt that it is uncomfortable to sit for any length of time.... I was one of those who never sat....Now I am doing Dialysis everday... I sit for awhile but then I stand too.... cant move around alot but standing does help..If my pressures go up too high  I just slow down the machine.... take a break....
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
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- John Muir
greg10
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« Reply #54 on: November 28, 2010, 10:58:49 AM »

No one seems to have mentioned this, but you can get a mattress overlay that has alternating filling and emptying, reducing the constant pressure on your back side.  This is generally used in the hospital for preventing bed sores.  It may be of use in this case.  About $60.  This can be noisy for some people.
« Last Edit: November 28, 2010, 11:00:04 AM by greg10 » Logged

Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
lunadatura
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« Reply #55 on: December 05, 2010, 12:10:46 AM »

I was recently in a large sports supply store and notice that they had a number of items for watching outdoor sports like inflatable cushions for seats and it made  me think of this diiscussion  :rofl; so i thought i would share that there are alot of comfort items in the sporting goods store or on line that might make the sport of sitting through D for 4 hours more bearablle  :yahoo;
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Diagnosised FSGS via biopsy 11/2006
Started Dialysis 5/2009
hemo-dialysis except 9.09-6.10 = peritoneal then back to hemo
currently in center hemo 3x per week
Evaluation for transplant July 2010
Almost received transplant 8.13
repeated calls and admissions for transplant since then but no kidney yet
3.1.14 got ideal kidney and having exceptional recovery - creatine went from 8.5 to 1.1 in less than 2 weeks.
Des
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« Reply #56 on: December 05, 2010, 10:09:48 PM »

No one seems to have mentioned this, but you can get a mattress overlay that has alternating filling and emptying, reducing the constant pressure on your back side.  This is generally used in the hospital for preventing bed sores.  It may be of use in this case.  About $60.  This can be noisy for some people.

This is a bit inpractical for me. I can not carry so much stuff to the unit as I battle to carry it all with one arm afterwards. Maybe the people that do Nocturnal D can use it.

I constantly change the position of my chair.... ie. the top section up/down and the bottom section up/down. That helps a little.
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Bruno
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« Reply #57 on: December 06, 2010, 03:24:21 AM »

Hot news fellow sufferers, I have pioneered a development that I have proven over three (yes, three!) test runs will completely eliminate the "wedgie" problem. It is my intention to patent what is in essence a very simple device and one that contributed to my rehabilitation and re acceptance back into my dialysis ward. Those who no longer spoke to me (yes, there was a time when I was ignored) now greet me even in a somewhat subdued fashion.
What is the secret? I can hear you asking
It's simple, I now wear a thong, in a large size admittedly but certainly in a tasteful colour. (a delicate mauve)
I realise it's normally a ladies garment but folks it works and it's not as though I'm suggesting we fellows adopt it for normal wear (unless?)
On another subject I'd like your advice, I notice I've finished my last three sessions with a severe headache...any suggestions?
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rsudock
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« Reply #58 on: December 06, 2010, 03:57:05 PM »

On another subject I'd like your advice, I notice I've finished my last three sessions with a severe headache...any suggestions?

Bruno I noticed I get headaches quite frequently too. A nurse told me it was your body trying to adjust and recaliberate from all the fluids that are gone. I usually go home and go to bed and it is gone the next day. Sometimes I put ice packs on my head.

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
casper2636
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« Reply #59 on: December 06, 2010, 04:53:38 PM »

I get headaches too, but was told it was the fluids in my head getting used to the pressure changes due to the liquid being moved during the dialysis process. I was told and have been receiving meds (Manatol?) that help relieve them. Don't know if this is fact, but whatever they give me helps, 'cause I know those headaches are awful!
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casper2636
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« Reply #60 on: December 06, 2010, 04:57:37 PM »

Oh, ya...In response to the wedgie solution, you're basically saying if you start out with one, you wont worry about getting one though out the session because you started with one? :rofl;
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billmoria
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« Reply #61 on: December 06, 2010, 06:46:12 PM »

  :guitar:   Tonight was impossible! Sat down at machine at 5pm. It had 6 minutes to go. It just would not start. The nurses tried everything and it did not good at all. We had to shut machine down and go thru all the tests again. Still, no luck.  :urcrazy;  I finally got the clock ticking at 6:45!!!!!!!!!!
4 hours later - my bum was screaming for relief.
Some days it just don't pay to get out of bed - only kidding
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WMoriarty
Des
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« Reply #62 on: December 10, 2010, 05:14:40 AM »

In our case it doesn't pay to get into one for 5hours.  :2thumbsup;
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Bruno
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« Reply #63 on: December 13, 2010, 01:50:02 AM »

Here's an odd thing...I didn't wear my thong (pale mauve) to my dialysis centre today (it was being laundered and starched) and for the first time in a while I didn't end up with a headache. My mother (who loaned me the thong) said it may have been too tight. She's 60 kg and I'm 112kg.
What do you think? Should I only wear it for cricket practice or is it the wrong colour for a clean living Aussie bloke?
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Stoday
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« Reply #64 on: December 13, 2010, 06:36:04 AM »

You must have worn it back-to-front.
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Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
Started hemo July 2010
Heart Attacks June 2005; October 2010; July 2011
Gandalf
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« Reply #65 on: December 15, 2010, 03:07:50 AM »

Must say I agree - the overwhelming sensation of numb bum far outweighs anthing a needle has to offer by way of discomfort, and what makes a bad hair day worse is when the cramps set in near the end of the session.  Find myself staring at that timer with absolute certainly that time has indeed stood still, and that I am forever locked in to the Hell that is internment in a dialysis chair!
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galvo
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« Reply #66 on: December 15, 2010, 03:22:28 AM »

Well said, Gandalf.
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Galvo
natnnnat
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« Reply #67 on: December 15, 2010, 03:57:43 AM »

Bruno:  you might think size would be a factor, but I suggest the real problem might be the colour.  Honestly, starched mauve;  it's giving me a headache just thinking about it.
« Last Edit: December 15, 2010, 04:49:25 AM by natnnnat » Logged

Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
casper2636
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« Reply #68 on: December 15, 2010, 02:00:07 PM »

Just out of curiosity, I'd love to see the sight! Starched? Really? :sir ken;
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Trena
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« Reply #69 on: December 20, 2010, 12:02:57 PM »

About a year and a half ago I was sitting in my chair and slid which caused a shear injury to my backside. This means the flesh moved and the muscle didn't. At first it was just sore but I soon after contracted an infection from the placement of my current fistula which caused me to go into septic shock and spend a month in the hospital. I ended up with a Stage 2 bed sore on my tush. After I was released from the hospital I couldn't sit without being on a pillow. I discovered that a memory foam pillow that is about 3 inches thick works very well to prevent the numb butt. I also used a pillow behind my back. The chairs the unit has are old and broken down. After the 4 hour run I was so sore I could hardly walk. I have since switched to home hemo and only run for 2.5 hours a day and have a hospital bed but still have problems with back pain during the run.
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knittingdan
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« Reply #70 on: December 20, 2010, 01:02:07 PM »

I find that I can sit on my bum for around 2-3 hours, then I have to move over onto a hip.  Once I've made the transfer, I have to switch hips about once an hour(I run for 8 hours at a time). 
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Bruno
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« Reply #71 on: December 23, 2010, 12:32:31 AM »

I have given up the idea of wearing a thong (pale mauve) due to the remarks (some of which have tended to be derogatory) made by several contributors to this thread. I had intended this to be a serious discussion on what can be a serious medical problem as you can see from Trena's post where as you can see she has developed BS (bum shear).
But no matter, I thank all those who made a sincere effort at relating the many methods they have found useful.
For myself, I will continue to fearlessly investigate this problem even though the nurses at my centre have now put a screen around my seat, to protect the other dialysers, I am told.
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